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A Father's Promise: Making A Stand Against Epilepsy


I promise. Two little words that we so often over use. I promise I will wash the car. I promise I won’t tell a secret. I promise I will be home early so you can go out with your friends. I promise. But what does that really mean? It means a commitment to do something. It means someone trusts you to follow through on your word.

I made a promise to Livy many years ago. It was no small promise and is one that has utterly changed my course in this world. I promised to do whatever I could to help her and to find a cure for epilepsy. In 2009, she was in the hospital with uncontrolled seizures. I sat there watching the nurses put Ativan in her IV. Then I watched as she began seizing again only a half hour later. This went on and on for two months until she eventually received a hemispherectomy; an aggressive procedure that disconnected the left side of her brain. It was her second brain surgery. She continued to have seizure after seizure for another month until we finally regained control. That hospital stay seemed like an eternity. I left the hospital a different person on many levels.

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Guest — Lampert's Therapy Group
Jon, we're happy and proud to stand by you and help you with your promise to your beautiful daughter. You and your family are an i... Read More
Friday, 19 June 2015 10:06
Guest — #Guest
hello can i have your personal email address?
Saturday, 30 July 2016 17:57
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A Father's Promise

A long time ago, I made a promise to Livy that I would always be there for her. I have kept that promise. Now it is time to take it one step further. It is not enough to just be there for her, something must be done. Lemonade for Livy was inspired by Livy and her amazing spirit. Its foundation is built on a sister's love and a mother's devotion. It is also based on my promise. Lemonade for Livy is fulfilling that promise by bringing people together from across the country to be a part of something meaningful, to create epilepsy awareness and to raise funding for research so that a cure can be discovered. If you have not yet registered your stand or party, I encourage you to do so at www.livyshope.com/lemonadeforlivy. And please share with others so that we can spread epilepsy awareness.

This is the first time I have written about the promise I made to Livy years ago and what it means to me. Livy's epilepsy has changed me. And now it is time to fight back.

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Guest — Karen Jacobs
Not enough adjectives to express how wonderful, great and beautiful 'A Father's Promise' is. Also, this picture of you and Livy is... Read More
Wednesday, 23 July 2014 11:17
Guest — Jon
Thank you so much Karen!
Wednesday, 23 July 2014 12:49
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Will You Stand With Us?

This past week, we sent out an email to family and friends. I thought it was important to share since many of you have been following our story from the very beginning. For years, we have watched Livy struggle with epilepsy. We have shed many tears and experienced tremendous heartache as she courageously fought through episode after episode and multiple surgeries. In the end, what Livy needs is a cure.

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Guest — Maureen Magagnos
I am so impressed ! Heartfelt We will stand behind your family. We have just gone through the nightmare of uncontrolled epilepsy w... Read More
Tuesday, 22 July 2014 23:52
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A Family's Stand Against Epilepsy


We have no idea what life for our family would be like if Livy hadn't been born with epilepsy. From the moment she took her first breath, she was destined to change what we perceived to be our path in this world. We never knew what epilepsy could do to someone or to a family.

A seizure was something we saw in shows like ER or House when people were in accidents or had brain tumors. We didn't know the statistics such as 1 in 26 people will develop epilepsy or that there are 3 million people in the United States and 65 million people worldwide that have epilepsy or that two thirds of people with epilepsy don’t even know the cause. We didn't know that an estimated 50,000 people in the United States die each year from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. We didn't know.

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Guest — April corvin
Thanks for the share your blog, my son has epilepsy and started to have seizures at 15 months old. He is now 10 and we are looking... Read More
Friday, 27 June 2014 07:01
Guest — Sandy @ Being Content Where We Are
My son is 5 years old and he started having seizures at 14 months old. He is finally on a medication that somewhat controls his s... Read More
Friday, 27 June 2014 07:07
Guest — Carol Lee
I didn't know all this either. Love you lots!
Friday, 27 June 2014 20:31
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I Imagine A Cure

When I look into Livy’s eyes, I know more is going on than there seems to be. She can’t talk or communicate in the typical fashion, but she has her own way of letting us know how she is feeling. Most of the time, we are kissing her and hugging her. So her smile lights up the room. She is just like any kid who feels the genuine love of her family. When she is uncomfortable or hurting, she tells us by her sounds as well as increased seizure activity.

I often put my head against hers and whisper, God, please let me hear what she is thinking. Just this once. My prayers have yet to be answered but if I really listen to her sounds and look at her facial expressions, I can almost get there. Sometimes my imagination gets the best of me. Is she scared or confused. Does she feel lonely or trapped? Does she want to say something but her brain won’t let her get the words out? Does she want to tell us she loves us?

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Guest — Jim and Cindy Karwowski
Your thoughts are so beautiful and God-inspired.
Friday, 18 October 2013 10:34
Guest — Carol
My heart is still with you...hugs,
Friday, 18 October 2013 11:41
Guest — Jim and Cindy Karwowski
Your thoughts are so beautiful and God-inspired.
Friday, 18 October 2013 10:34
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PICU vs. Party

PICU vs. Party

Yesterday morning it was becoming pretty apparent that Livy was only getting worse. We have a certain amount of "emergency" medications for seizures we can give her at home before respiratory issues can arise. I had maxed out everything and she only continued to seize. Jon came home from work and we weighed out everything. Hospital stays for Livy are never short when it comes to seizures. I am not talking days but weeks and sometimes months long. We always do whatever we can to put off going as long as possible. We looked at each other and both knew it was inevitable.

The ER stay lasted from just before lunch until after 8pm last night. It had been over two years since we had been there for seizures. All those precious months of control. They did lab test, a shunt series, x-rays and an MRI. The only thing they found was that her sodium was running a little low (128). She tends to run in the low 130s but the dip below could be cause for increased seizures. After consulting with Livy's neuro up at Shands, they decided to start her back up on the seizure med we just finished weaning last month. She was admitted just after 8:00pm.

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Recent Comments
Guest — Gary Parrish
I so appreciate your updates. Although we've never actually met, I care for you all very much - especially Livy. I have been think... Read More
Saturday, 27 October 2012 23:28
Guest — The Cortes Family
We know God is shining on Livy, maybe even more during these difficult times. We will pray for a short hospital stay for all of y... Read More
Sunday, 28 October 2012 00:20
Guest — Amanda
although we have never met I am new to the blog. I am praying for all of you during this difficult time. all the way from canada... Read More
Sunday, 28 October 2012 08:02
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